Post thyroidectomy advice

[mml570]

In Jan. 07 I had a full thyroidectomy. Two foci were diagnosed as probably papillary cancerous cells. The doctor said no treatment necessary. We asked if there were tests to make sure the thyroid was completely gone. Her answer: Why would you need a test! It's gone!

After a letter from a tumor registry this summer (a year and a half after surgery), she suggested thryoid globulin test and  ultrasound. The ultrasound found 2 sites: 12 mm x 9 mm and 3 mm x 3 mm of suspected thryroid tissue.

1) Shouldn't the doctor have told me earlier that this test was available so we could have check a few months after surgery?

2) What do I do now, have thyroid surgery again?

[ChitChatNine]

Unfortunately, I had my partial in Jan 07 like you and at first all my docs had the same non-chalant approach .. then after they read studies from the Endo Association that I HAD TO POINT out to them, they changed their tune and took it much more seriously.  There is, for some reason, a lesser concern among most docs that this isn't really cancer .. it is out of this world . I ask them WHAT IF IT WERE YOU?

I, too,had two foci .. fully encapsulated and no lymph node involvement; so I had to decide what to do with the other side!  I opted to keep it in.  However I go ev. 6mos for ultrasound as there is a small 4.0 stable nodule .. but I don't heal well and in my case they are afraid of serious comlications from scar tissue so better to keep it in.

Fire your Doc and go with the tests ........they are imperative!

C~

[utahmomma]

First thing, find a new doctor!  Find a good endocrinologist who specializes in thyroids (most specialize in diabetes).  An oncologist might be the answer too.  

Your doctor should have known that thyroglobulin and TSH tests are *mandatory* for cancer patients post op.  Did she put you on a high dose of thyroid replacement hormones to suppress the cancer??

Yes, your doctor should have checked you about 3 months after surgery then every 3 - 6 months after that.

Where were the spots identified by the ultrasound???  In the thyroid bed, lymph nodes???

Depending on where the cancer is located another surgery *might* be indicated but, definitely, a RAI (radioactive iodine) treatment is going to be needed.

Here's some info on what I'm talking about:  http://www.endocrineweb.com/capap.html

Smack your doctor upside the head (twice) for us - (right before you fire her)!!!  Unfortunately, welcome to the well-populated world of thyroid patients who have had stupid, clueless doctors!

I'm sorry for all you are going through.


Utahmomma
papillary carcinoma '03 second surgery '04
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with distant metastases and three recurrences/RAI)
other sister with precancerous nodules (and new growth)
daughter with precancerous nodules